The UK's First AIDS Victims Remember Lost Ones on World AIDS Day

Ellee Seymour
Ellee is an author, press consultant working with innovators and the biotech industry.

Imagine being an NHS hospital patient requiring blood products and the treatment you received gave you HIV, as well as other serious contaminants, causing death and lifelong debilitating illness.

That is what happened to many hundreds of haemophiliacs in the UK more than 30 years ago, those unfortunate to be born with an hereditary genetic disorder that impairs the body's ability to control blood clotting. Treatment requires the use of clotting agents. In the 1970s and 1980s, blood products were manufactured from blood supplied by prisoners in America and the UK. This blood was contaminated with HIV, along with other serious viruses.

In the early 1980s, 1,249 haemophiliacs were infected with HIV/AIDS - and only 316 survive today. Tragically, some families were decimated by the loss of several family members who received contaminated NHS treatment, including one family who lost three brothers and a daughter-in-law, all through AIDS. The mother of the three men later died of a heart attack.

Unbelievably, these innocent people and their bereaved families have never been given an apology or compensation, neither has there been a public enquiry, and survivors continue to fight for justice - those who have enough strength to do so. Today, campaigners from Tainted Blood, which exists to support and achieve justice for those infected and affected by contaminated blood products in the UK, are today meeting the new health minister Anna Soubry and a team of medical experts and desperately hope she will support their cause.

I don't see how she can fail to, after all, Lord Robert Winston described as "the worst ever treatment disaster in the history of the NHS".

I have written previously about the wider issues surrounding this heartbreaking catastrophe, but today's post is focused on haemophiliacs who were infected with HIV in the run up to World AIDS Day on Saturday, 1st December. To commemorate this, they have published a book, "Tainted Blood, Stories Behind the Statistics", which features 14 tragic and moving stories from victims and relatives of those who have died from AIDS.

Sue Threakall, whose late husband Bob was a haemophiliac with AIDS, is chair of the campaign group Tainted Blood, and said World AIDS Day was a poignant reminder of the tragic loss of hundreds of innocent lives, patients who had been given contaminated blood products infected with HIV, as well as Hepatitis C and other devastating disorders. She said:

"The publication of our book is a reminder of the friends, family and fellow campaigners we have lost, and we will continue to fight for justice on their behalf. The scale of human loss is devastating; I know one family who lost three brothers and a daughter-in law all through AIDS. The mother of the three men later died of a heart attack. As well as this terrible suffering, they carried the stigma that was associated in those days with being an AIDS victim.

"Thankfully, diagnosis and treatment for HIV is much improved today with simple tests and effective treatments which can help save lives - if accessed before the onset of AIDS. It is crucial that local authorities, who take over the remit for sexual health promotion from April 2013, ensure that this remains a high profile issue in their area."

Mark Ward, from Brighton, was diagnosed as a severe haemophiliac at the age of three and was infected with the AIDS virus from contaminated blood at the age of 13. This has blighted the rest of his life and ruined a flourishing career. He describes the devastating impact it has had on his life:

"At the age of 43 I am crippled, dependent on a highly toxic cocktail of chemicals, with no idea of the long term affects. I have irreversible damage to a number of my major organs including renal failure. I suffer from PTSD (post traumatic stress disorder) as well as Phobic anxiety disorder. My joints are disintegrating and my risk of cancer is extremely high. The scars of the past which cannot be seen have been ignored and as my body crumbles those who could help me stand by and watch. I've lost count of the friends who have been taken along the way and know the battle which rages inside of me will eventually take over completely.

"Now my days are taken up with Tainted Blood, campaigning, using my knowledge and experience to support those infected and affected by this haemophilia holocaust.

"My self esteem is non-existent; I am treated like a trouble maker and humiliated by those who are paid to care for me. My dignity destroyed and thirty years on from my infection, doctors refuse to answer my questions, they just add to my suffering by attempting to ignore the past with their neglect.

"No compensation has been awarded because we are all out of time. They told us it was an accident and back in those days nobody knew about medical negligence. We trusted them with our lives, literally and had every faith in what they were doing for us. Little did we know how wrong we were."